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No Mortal Enemy: The Mannix Manifesto

Posted on 11th January 2018 by Martha Greengrass

"After 30 years in palliative care, I am on a mission. It’s time to re-claim public understanding of dying."

A pioneer in palliative medicine for over four decades, Kathryn Mannix is on a mission to change how we think about and plan for our death and the deaths of those we love. In her new book, With the End in Mind, she presents real stories of normal death, illustrating how living in conscious acceptance of our own mortality needn't mean living in fear. Here, she presents a revolutionary manifesto for reclaiming our understanding of death; stories that can change the way we live and help us find a better way to die.

Humans have the capacity to contemplate our own mortality. This is a mixed blessing: on the one hand, the finiteness of our lives can make us appreciate and savour the precious nature of passing moments; on the other, a fear of dying can permeate and spoil our living by contaminating it with anxiety and speculation.

Fear of the unknown is primal. Our clever minds do not tolerate a knowledge-vacuum; instead, our imagination offers us strange possibilities that we pull in to fill the gaps. Our understanding of death is often based on the vicarious experience offered by media stories or soap opera. Normal, gradual, gentle deaths are rarely represented in these spaces, so gristly untruths form the basis of our death-beliefs. If we therefore believe that dying will be terrible, then of course we will take extraordinary measures to avoid it, or at least to postpone it for as long as possible. We deal with our primal fears in two ways. Either we suppress them, so that they become taboo, or we turn them into myths.

The Taboo of Death is well-evolved in the developed world. It has become impolite to use the vocabulary of death in daily conversation. Instead of dying, people ‘pass away’ or ‘lose their battle.’ We refer to them not as dead, but as ‘late,’ ‘departed’ or ‘sleeping.’ These are realities that dare not speak their name, and so we neglect to discuss, we avoid planning, and we are tragically caught out when illness sweeps us down and our loved ones have no idea what our wishes and preferences would be.

Our mythology of death is unhelpful, too: the real deaths that reach public awareness are generally the exceptional. Those grim, badly-managed, painful deaths, or those lacking in dignified, respectful care promote outraged media reports, whilst the unsensational, gradual and gentle norm is not suitable as a soap opera plot and promotes no media interest. This skewed attention to horror both sensationalises and yet also trivialises the reality of human dying that is experienced by most people at the end of a terminal illness: the gradual, inescapable physical decline which, while the mind remains intact, offers an opportunity to anticipate and plan for those last months, weeks or days; to optimise symptom management; and to focus on the things most important to us.

After 30 years in palliative care, I am on a mission. It’s time to re-claim public understanding of dying. It’s time to understand what the process is, and how it evolves, and how it allows us to plan and relate to our dearest people over the last part of our lives. It’s time to recognise that, despite the advances of medicine, none of us is immortal and that dying well is a real possibility for which we can plan. It’s time to give each other permission to discuss our preferences for how and where we would like to be cared for; whether we would value any length of survival in any condition of body and mind, or whether we would prioritise physical comfort and emotional peace over the extension of living using machines and drugs.

My weapon of choice for this campaign is stories. I have helped to care for thousands of people at the very ends of their lives, and it is their experience that I offer, suitably anonymised, to fill the information gap. These are stories about people who could have been your friend, your sister, your dad, your son. These are stories about how dying people embrace living not because they are unusual or brave, but because that’s what humans do. These are stories about normal humans, dying normal human deaths, and they offer us illumination, models for action, and hope.

I hope you’ll join us.

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